My mother has approached late stage dementia. She has fallen and needed emergency lift assist twice this month. My father has provided 100% care for her for the last five years. He now has pneumonia and I can tell he is exhausted and needs help. But is being stoic and stubborn insisting that he can continue to care for her while trying to recover.
I am calling her primary care for a hospice reference and assessment. What else should I request from the primary and hospice?
I am well versed with POA and financial aspects for long term care facilities but home care is a new beast to tackle. I am POA for my mother but I am including my fathers wishes and best interest as well. He really wants to allow her to remain home and not be separated from each other. They just celebrated 59 years of marriage and I can't fathom me having to separate them now.
Any advice is very appreciated. It is avery emotional time and I am trying to remain realistic and my focus isn't at its peak so if I have omitted any information that may help with answers I will try my best to add informationas asked.
From the sounds of it your mother would most certainly qualify for their services. Though keep in mind that to start a nurse will come out only once a week to check your mothers vitals and aides will come about twice a week to bathe her. Other than that the rest of your mothers care will be on you, your father or any hired aides you may need.
Of course hospice will supply any and all needed equipment, supplies and medications all covered under your mothers Medicare, but 99% of her care will still fall on you and your father.
I think that now you must do what is best for all involved, which may include having your mother placed in a nursing facility where you all can get back to just being her loving family members instead of her overwhelmed and burned out caregivers.
I am acutely realizing that a LTC facility may be better. But I need to explore the resources that may keep her at home for my fathers benefit. He is very realistic but love, devotion and obligation is overshadowing his thought process. I need to do due diligence and give my father the evidence that long-term facility is best for mom for him to see I am not jist dumping her there. It has been a long journey for them.
The falls have occured when she has been walking with a walker from couch to bed. I truly believe she is now going to be bed ridden. She hasn't made amy attempt to get out of bed for weeks. Unfortunately my father was insistant that she have movement and that contributed to her fall/collapsing to the ground.
So the assessment will be looking at her ADL abilities, how her medications are done and if she seems lucid and cognitive of where she is, what the day is, etc. type of details. However in addition to all this, they will look at the condition of the home (that it’s condition is sanitary and safe) and who the individual(s) will be as the person required to be there all non hospice time as her caregiver as per In Home Hospice regulations. Hospice is a Medicare Part A benefit and a requirement under Medicare is there needs to be an adult caregiver present for all times other than when the hospice staffers come to see your mom at home. The same requirement is there for those who are in PACE too as it is primarily paid by Medicare.
Should your Dad appear not to be able to physically do what’s necessary for him to be her caregiver for all the rest of the time when hospice is not there, the agency can put in their report something like “for the safety and security of the patient, we are recommending placement in a nursing facility. As such we are unable to meet the clients needs”. If during the assessment, there are questions regarding your parents fire escape plan, that is a red flag that they have serious concerns about him all by himself being the only go-to caregiver for her. If she will be needing a Hoyer lift and he can’t physically do what needed to assist her to get her in & out, that’s another red flag. Ditto for him being able to bathe & Hygiene her if she is bedfast. Hospice tend to want at least 2 persons involved with caregiving and on a schedule. They want the caregivers to be able to have their own time and be able to get their rest. If the person is way younger (like in their 40’s / 50’s but terminal cancer) and can do their medications, hospice can be ok with a caregiver that is not FT & always there. But your mom sounds like needing always 24/7 oversight.
Now if the goal really is she is best off in a facility, then your expressing your own concerns about dads limitations to be solo caregiver and that he’s recovering from pneumonia and that you cannot yourself be an in their home caregiver…. Well this could work in your favor to get mom into a facility….. that In Home Hospice really isn’t feasible option if it’s just Dad. But if you do want to try In Home for a while, I’d really suggest that they plan on hiring a caregiver to come in 3-4 days a week for the minimum 4-5 hr block that most healthcare companies require. And you have this info lined up and drop into place once hospice starts.
If your mom is completely bedfast, realistically in my experience, it takes a team to provide the bathing, dressing, hygiene, almost inevitable wound care, and companionship she needs. My mom was on hospice and 100% bedfast 18 l…o..n…g months (fell forward pulling her wheelchair to go to activities at her NH), the bathing was a 2 - 3 person team in a shower room with mom in a geribathe chair. It was pretty amazeballs to watch them, there was no way that I solo on my own could ever bathe her to the degree that they did.
Hospice will pull your parent's records from the PCP to evaluate.
The medical staff pulls Mom's electronic records and the Doctor back at the hospice will make the final decision about entry into hospice.
CNA's do end of life care all of the time.
I use 1and 1/2 cups of white distilled vinegar when washing, especially for Grandma she sometimes wets in her clothes. Vinegar kills germs and sanitizes
your clothes. Give it a try, you will like it. Answer back and let me know what you think.
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